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Reportedly, Mark Blaxill is a CDC “Senior Advisor”. Remember, this is not The Onion.

28 Sep

How does one recapture trust in the public health system? I can tell you one way to make it worse. Put Mark Baxill to work at the CDC. Mr. Blaxill is a long time anti-vaccine activist who has done a lot of harm promoting the “vaccines cause autism” lie. We on this blog have been countering Mr. Blaxill’s misinformation for about two decades now.

According to Alt CDC, Mr. Blaxill now is in the Office of the Director. Once again: this is not The Onion. This is not April Fool’s day. This is life under Donald Trump and Robert Kennedy. Meritocracy is not a thing anymore. Fealty to the “vaccines are bad” campaign is. I’m open to counter arguments by those who feel Mr. Blaxill earned a spot at CDC. Go ahead. Point to his books and his papers, his writing on the Age of Autism blog and convince me he has the chops and, mostly, the integrity to serve as a public health “consultant” in what was once the premier public health agency in the world. I’m listening.

I don’t see Mr. Blaxill when I do a search on the HHS employee directory. But I am told he is a “senior advisor/consultant” reporting to Matt Buzzeli. Mr. Buzzelli is a political appointee, apparently assigned to CDC after the recent purge of qualified public health officials at CDC. So we have Mark Blaxill who, ignoring his anti-vaccine activism, is a businessman, and an apparently failed politician (he created his own political party which appears to have gone nowhere, and had a failed bid for a congressional seat). And he works for an attorney who “worked with the Family Office of Norm Miller to support the development of Interstate Batteries’ emerging retail and commercial operation.”

We’ve replaced people who were nonpolitical experts in their fields with these gentlemen. Feeling more confident about the CDC? Neither am I.

By Matt Carey

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For Robert Kennedy “Restoring Trust” is not a goal. It’s a weapon.

3 Sep

We pay for the CDC. It isn’t there to support Mr. Kennedy’s agenda. It’s there to generate good information that Mr. Kennedy can use or, sadly, not use. He can’t ask them to sign off on dangerous vaccine policy and then cry “restore trust” to excuse firing the trusted experts who are, in his own words, world-leading experts who drive the science that serves us all.

Robert Kennedy (aka RFK Jr.) is now the Secretary of Health and Human Services*. He came to this job after his failed run for the office of President, but if you follow his social media you know: he still sounds like someone campaigning.

He loves slogans. Of course he has his “MAHA” (Make America Healthy Again) which not only brands his movement, but allows him to flatter Mr. Trump at the same time. Two more slogans are very important to him and are what I will focus on today: “Restoring Public Trust” and “Gold-Standard Science”. On first glance, they sound like good aspirational goals. But “restoring” public trust is a slam, where Mr. Kennedy makes people accept his premise that people don’t trust the CDC. Likewise, “Gold-Standard” science is a way of saying that results produced before his tenure are low quality.

Allow me to discuss Mr. Kennedy’s failure this last week with the CDC to highlight his use of “Public Trust” as a weapon.

What failure am I thinking of? Losing much of CDC’s leadership through mismanagement. That failure. Last week, Mr. Kennedy tried to pressure the head of the CDC into rubber-stamping his agenda on vaccines. The CDC Director, Dr. Susan Monarez, not only refused to approve Mr. Kennedy’s anything-but-gold-standard vaccine policy, she also refused to recognize Mr. Kennedy’s authority to fire her (Kennedy Sought to Fire C.D.C. Director Over Vaccine Policy) Eventually she was fired by the President.

At least four other senior CDC officials resigned over Mr. Kennedy’s actions with Dr. Monarez (CDC director is out after less than a month; other agency leaders resign). The list includes Dr. Debra Houry, the agency’s deputy director; Dr. Daniel Jernigan, head of the agency’s National Center for Emerging and Zoonotic Infectious Diseases; Dr. Demetre Daskalakis, head of its National Center for Immunization and Respiratory Diseases; and Dr. Jennifer Layden, director of the Office of Public Health Data, Surveillance, and Technology.

Losing so much expertise in one week in a huge blow to America. We all rely upon the CDC. We rely on expertise, experience and a nonpolitical agency. Make no mistake, all this is a huge blow to Mr. Kennedy. He not only lost experienced leaders who could provide him with quality information (which, he appears to be too arrogant to ask for), but also the reputation of the CDC and these staff. Mr. Kennedy wouldn’t have wouldn’t have pressured Dr. Monarez to rubber-stamp his policy if he didn’t want the credibility of the CDC behind his action.

If this wasn’t bad enough for Mr Kennedy’s claim to be restoring trust, nine (nine!) former CDC directors wrote a scathing (to use the New York Post’s word) editorial spelling out how dangerous Mr. Kennedy’s actions are: We Ran the CDC: RFK Jr. Is Endangering Every American’s Health. If it had been one, or only democrats, perhaps Mr. Kennedy could shrug this off. But it was nine former heads of the CDC. People who know how CDC works and know how important it is.

Clearly it was time for damage control. Mr. Kennedy took to the Wall Street Journal to defend himself. Instead of acknowledging that he severely damaged trust in the CDC, he spun his actions as “restoring public trust” (Robert F. Kennedy Jr.: We’re Restoring Public Trust in the CDC). Of course, to “restore trust”. Mr. Kennedy states “First, the CDC must restore public trust—and that restoration has begun.” No, really, it hasn’t. When nine former CDC directors come out and not just disagree with you, but state that you are “endangering every American’s health”, you can’t claim to be restoring public trust.

Focus on how Mr. Kennedy uses “restoring trust”. “Restoring trust” isn’t a goal. It’s a weapon. Stand up for the health of Americans? You are out, because we need to “restore trust”. It’s an excuse. “Did I try to ram through a vaccine policy so dangerous that over a dozen leaders, past and present, of CDC protested? No! I was ‘restoring trust'”.

The final sentence of Mr. Kennedy’s opinion piece is a slam to the good people who stood up and resigned. Mr. Kennedy doesn’t have the guts to directly call them out, instead he simply states:

It won’t stop until America’s public-health institutions again serve the people with transparency, honesty and integrity.

Yep. Those good people were part of a system that doesn’t serve with “transparency, honesty and integrity”. As opposed to Mr. Kennedy, who fired most of the FOIA staff (so much for transparency) and, frankly has rarely shown integrity and honesty in the 20 years I’ve known of him.

Consider that just a few weeks ago, Mr. Kennedy responded to the shooting at the CDC campus by praising the very people he now accuses of lacking integrity and honesty and the “public’s trust”. How did he characterize the people who work at CDC then**?

Whether diseases start at home or abroad, are curable or preventable, chronic or acute, or from human activity or deliberate attack, CDC’s world-leading experts protect lives and livelihoods, national security and the U.S. economy by providing timely, commonsense information, and rapidly identifying and responding to diseases, including outbreaks and illnesses. CDC drives science, public health research, and data innovation in communities across the country by investing in local initiatives to protect everyone’s health.

Yes. In a couple of weeks, they went from “world-leading experts” who “drive science” to people who lack “transparency, honesty and integrity”.

Mr. Kennedy is a politician. He’s not a doctor or a health expert. As a researcher who has followed Mr. Kennedy for 20 years, I can say he is not in any way the expert on reading science that he claims to be. He’s a politician. One week it serves him to praise CDC and the people there. The next he needs to slam them to excuse his own inexcusable behavior.

We pay for the CDC. It isn’t there to support Mr. Kennedy’s agenda. It’s there to generate good information that Mr. Kennedy can use or, sadly, not use. He can’t ask them to sign off on dangerous vaccine policy and then cry “restore trust” to excuse firing the trusted experts who are, in his own words, world-leading experts who drive the science that serves us all.

By Matt Carey

*It’s been six months, but it is still mind boggling to read, much less type, that sentence. After 20 years of following Mr. Kennedy’s action, much of that chronicled on this blog, it would be hard to imagine someone worse for the job that Mr. Kennedy.

** One might argue that since Mr. Kennedy didn’t sign that statement, these aren’t his words. He’s the Secretary of HHS. The quote is from a “Statement from the U.S. Department of Health and Human Services“. If one wants to argue whether these are his words or just words he approved of, go ahead with the semantics. The end result is the same.

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WSJ: Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism

9 Jun

For years, I’ve hoped major news outlets would shine a light on figures like David and Mark Geier—key players in the anti-vaccine movement that has harmed autism communities for decades. Now that attention has come, but since it’s due to Robert Kennedy being the Secretary of HHS, I wish it hadn’t.

Last week, The Wall Street Journal reported that David Geier has been hired by Robert F. Kennedy Jr.. The article, by Liz Essley Whyte and Dominique Mosbergen, titled “Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism”, highlights what appears to be Mr. Kennedy’s plan to reanalyze CDC vaccine data—seeking to link vaccines to autism and allege CDC corruption.

Geier is aiming to reanalyze the data used in the CDC thimerosal study to see if it supports a link between vaccines and autism, people familiar with the matter said. But he is also interested in proving the CDC is corrupt, the people added.

The article is relatively short and it’s better for you to read it for yourself than for me to summarize it. Instead let me discuss my opinions of Mr. Kennedy and his decision to hire Mr. Geier.

People like to point out David Geier’s lack of credentials. While true (he has a B.A. and left graduate school without completing a degree), I would argue it’s very much secondary to the fact that he has a track record. And his track record in vaccine-related research is poor at best. There’s no reason for Mr. Kennedy to involve him again—unless, that is, the goal is to confirm a preexisting belief that vaccines cause autism. Ironically, that’s the very kind of bias and “corruption” Mr. Kennedy has accused public health institutions of engaging in.

Mr. Kennedy has access to skilled epidemiologists. If he truly wanted transparency and scientific rigor, he could commission a well-documented, peer-reviewed study. Instead, he brought on David Geier. The WSJ reports:

NIH researchers have been asked to help Geier, people familiar with the matter said. NIH employees recently requested that the CDC send over the entirety of the VSD—an ask that set off alarm bells at the CDC and among researchers at the healthcare networks, who worried whether their patients’ private health information would be adequately protected, according to other people familiar with the matter.

Which is backwards. Don’t have the experienced, qualified researchers help the unqualified guy with a bias. If he wants a quality study done and wants someone to ensure transparency, have Mr. Geier observe the actual researchers.

Sadly, this assumes an ideal world where researchers at NIH aren’t under threat of losing their jobs, their pensions and all, if they tell a clearly vindictive administration what it doesn’t want to hear. We don’t live in that ideal world.

As the saying goes, judge a person by their actions, not their words. Mr. Kennedy’s decision suggests he’s more interested in validating long-held beliefs than uncovering scientific truth. For years, he’s built influence and wealth off the backs of families like mine—families with autistic children. For years, he’s ignored good scientific results and instead promoted junk. Like that generated by David Geier.

Before I go on and on and completely lose the point of this article (the new WSJ article: Vaccine Opponent Hired by RFK Jr. Scours Official Records for Link to Autism), let me make three points:

  1. I have been following Mr. Geier, Mr. Kennedy and the anti-vaccine movement for 19 years now.
  2. I am the parent of an autistic adult. I have skin in this game. If there were evidence that vaccines caused an autism epidemic, I’d be shouting it out.
  3. I am a Ph.D. researcher with decades of experience. I’d say my publication record is better than Mr. Geier’s but that is a terribly low bar. I am well respected in my field. Mr. Geier’s publications are an affront to good scientists everywhere.

If there were real evidence linking vaccines to an autism epidemic, I would be the first to speak up. But what we’re seeing now is not a search for truth. It’s a continuation of a harmful agenda, now backed by the highest levels of government.

By Matt Carey

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How RFK Jr. could add $100B a year to the debt

31 Mar

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he wouldn’t have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, let the science speak, to quote Mr. Kennedy himself. He’s not doing that.

Robert Kennedy is (rightly) getting a lot of attention for his vaccine related actions. Just last week he pushed out the FDA’s top vaccine official (Top US vaccine official forced to resign, reports say). I will suggest it’s past time to stop reacting and start looking ahead–ask ourselves what is going to happen and what will the fallout be? That said, if we’ve learned anything from Mr. Kennedy, it’s that one should be careful and not fall into the conspiracy theory trap. So I’ll be careful and conservative as I predict what I think Mr. Kennedy is planning.

One Kennedy goal that seems obvious to me (and many others): get autism recognized as a vaccine injury. Get autism added to the vaccine injury table* to allow families to obtain compensation from the vaccine program. Perhaps he’s made this statement outright. I wouldn’t be surprised. But even if he hasn’t, I doubt many who have followed Mr. Kennedy’s words and actions would argue that this is a likely goal for him.

Let’s say he’s successful. What would be the result? Specifically, what would this cost? The vaccine court, after all, awards monetary compensation. It’s a pretty simple calculation:

$17B is a lot, but it’s not the $100B in the title of the article. Where did I get that? The support needs for an autistic person vary greatly, but, I would argue, they are higher than the average vaccine injury recipient. Also, we are talking about very young autistic children here, so there will be a lot of uncertainty projecting the lifelong needs and the court may be convinced to provide payouts on the higher end of the scale. Often in the past, I saw payments of about $1m to provide support for a lifelong disability awarded by the court, so I chose that number when I wrote the title of this piece. If we take 104,000 autistic kids being awarded $1m a year, we get $104B a year in vaccine court awards.

Let’s state the obvious: that’s a huge amount of money. That’s about 8 aircraft carriers a year. If Elon Musk found $104B a year in savings, believe me, we’d be hearing about it.

To put this more in context, the vaccine program has a trust fund of about $4.3B. This would be gone in the first year (potentially the first month) of autism cases being handled as a table injury. Technically, the vaccine court would have no money after that, and the awards should stop. This would put congress in a tight spot: allocate more money, or tell their constituents that that they voted to deny compensation to disabled children. I suspect they would vote to allocate funds. So we are talking about somewhere between $17B and $100B a year added to the budget, which would be directly added to the national debt.

I will admit that this is a very rough estimate of the financial cost. We could argue how much the average award would be. We could argue that not all autistic kids would get awards, even if autism were added as a table injury. So, maybe the total would go down. However, I also would argue that more kids will be diagnosed as autistic should autism be added as a table injury. Many more. How that balances out in the end can be debated, but I think a reasonable person can see that the answer will be billions of dollars a year and very likely many billions of dollars a year.

If autism were a vaccine injury, i.e. if it was legitimate to add autism to the vaccine injury table, I would say, “change the schedule now and pay however many families deserve it, no matter the cost.” But autism is not a vaccine injury. I will note that if Mr. Kennedy truly believed autism is a vaccine injury, he would not have hired David Geier to do the studies. Having Mr. Geier run an autism study is the equivalent of using loaded dice in a game of craps. Mr. Kennedy is buying the outcome he wants to see. If he wants to do more autism/vaccine studies, he would let the science speak. To quote Mr. Kennedy himself. He’s not doing that.

As I stated at the outset, one has to be careful of relying upon conspiracy theories. I believe I’ve stayed away from that here. I’ve made assumptions of what I think Mr. Kennedy wants to accomplish, but I think those are valid assumptions. And the cost analysis is very simple and I’ve laid it out very clearly. No chance to hide some trick in the math. I could be off by a factor of 10 and the conclusion would be the same.

One could and should ask why I am focusing on the financial cost and not the human cost. First, because autism is not a vaccine injury, we aren’t talking about a real human cost. Second, the financial cost is what will get the attention of Mr. Trump, Mr. Musk and congress. Sad to say, but I believe that to be the case.

The most logical outcome of adding autism to the vaccine injury table, in my opinion, is that congress and the president would be forced to choose between keeping autism on the vaccine injury table and ending the infant vaccine program. End the infant vaccine program and many people in Mr. Kennedy’s community (possibly including Mr. Kennedy himself), will say “mission accomplished.”** Pull autism off the table and the net effect is pretty much the same. The idea that vaccines cause autism will be accepted and vaccine uptake will drop. Many states will stop mandating infant vaccines. The infant vaccine program would be effectively dead.

Either way, Mr. Kennedy will be able to say, “See, I’m not anti-vaccine. I didn’t direct the infant vaccine program to end. They just followed the “science” (that I directed be created when I hired David Geier).”

By Matt Carey

* The vaccine injury table lays out injuries that are presumed to be caused by a vaccine. For example, if one develops paralytic polio within 30 days of getting the oral polio vaccine, it is assumed to be caused by the vaccine. If you haven’t heard of this, that’s because the U.S. doesn’t use the oral polio vaccine anymore.

** Recall that one of the people at Mr. Kennedy’s “Children’s Health Defense” is JB Handley (Vice Chair in 2018). Recall that Mr. Handley once wrote: “With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.”

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Imagine Mr. Kennedy working in a Trump administration.

17 Jul

Donald Trump was be very bad for America and very bad for the autism communities in specific and would be worse in a second term. Robert Kennedy would be very bad for America and very bad for the autism communities in specific. But it can get worse. What if Donald Trump were elected and put Robert Kennedy in a position of authority? Mr. Kennedy asked Mr. Trump for a job as some sort of “vaccine commissioner” before Mr. Trump’s first term.

A leaked video shows Robert Kennedy speaking with Donald Trump. Media outlets are focusing on Mr. Trump playing to Mr. Kennedy’s anti-vaccine sentiments. A Trump/Kennedy conversation exchanging vaccine fearmongering is, frankly, not newsworthy in my opinion. The fact that a call happened is not either, to be honest. It would be appropriate for Mr. Kennedy to speak to Mr. Trump following the assassination attempt. We don’t have the full conversation in the video, so we don’t know who initiated the call or why. Mr. Kennedy says the main message was “national unity”

But here’s the part that I worry about:

Trump also appeared to appeal to Kennedy, though it’s unclear for what exactly. “I would love you to do something,” Trump said, without offering further context. “And I think it’ll be so good for you and so big for you. And we’re going to win.”

Allow me to sidestep the “I would love you to do something” comment and focus on what Mr. Trump means by “so good for you and so big for you”. Most likely it’s Mr. Trump offering vague and empty promises. That would be very on-type for Mr. Trump. But, this will read to Mr. Kennedy’s followers as a possible open door to some sort of appointment in a Trump administration. They have speculated in the past about Mr. Kennedy running FDA or CDC. Which again would be very on-type for Mr. Trump’s planned second term: replacing people with competence with loyalists. Mr. Kennedy is unlikely to be a fierce loyalist, in my opinion. But, as a “burn it down” appointee, Mr. Kennedy might serve Mr. Trump’s vision well.

I am just amazed that Donald Trump is a viable candidate. His performance his first term was…bad. His disregard for the foundation of democracy should be undeniable, but denialists abound. The idea that Mr. Trump could appoint Mr. Kennedy to some post shouldn’t be the tipping point in one’s vote. Mr. Trump is bad enough as it is. But, seriously, Kennedy + Trump is worse than Trump alone.

—
By Matt Carey

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So Anti Vaccine Crowd, how did that campaign for Trump thing work out for you?

12 Sep

In 2016 the anti vaccine community was very excited to have a candidate who lent them credibility. They always crave credibility and will latch on to anyone who does so. Think Robert Kennedy Jr., Del Bigtree, Andrew Wakefield, the whole raft of charlatans that any reasonable movement would cut loose. But in 2016 they had Donald Trump, who evolved from dark horse candidate to Republican nominee to president.

Donald Trump had tweeted the vaccines cause autism lie:

Trump lies about vaccines to get attention

Trump lies about vaccines to get attention

And had made other comments about autism and vaccines.

By this time most people understood Donald Trump. He’s a shameless self promoter who likes to take controversial positions to get attention (birther conspiracy, anyone? He even revisited birtherism with Kamala Harris).

Being a conspiracy theorist wouldn’t alienate Trump from the anti-vaccine community. Far from it. Just as they deny their own conspiracy theory roots, they will look past this in Trump. And being a loud mouth who is often wrong? Well, that sums up JB Handley to a T.

Trump flirted with the anti-vaccine movement and the anti-vaccine movement fell in love. JB Handley (anti-vaccine activist who uses his position as an autism parent in his campaign) wrote an article: Trumps Stands with my Son, I Stand with Trump with comments like “If ending the Autism epidemic is your top priority, how in the world can you vote Democrat? rel=’nofollow'”.

Let’s leave aside that the “autism is an epidemic caused by vaccines” is doubly wrong. Many of us responded at the time: if having respect for people with disabilities (such as your son, Brad) were any sort of priority, how could you vote for Trump? Trump clearly doesn’t respect people with disabilities. For example:

Why would an autism parent support this?

Why would an autism parent support this?

That said, JB Handley and many others in the anti-vaccine movement (including other autism parents) clearly don’t respect people with disabilities. Remember when Del Bigtree compared autistics to dogs and exotic chimpanzees while autism parents Mark Blaxill and Ginger Taylor laughed?

Many of us autism parents prioritize our kids and the autistic community in general. We feel that respect and rights for people with disabilities is a paramount issue. And Trump had no disability plans in his platform. But the anti-vaccine movement, even the autism parents, do not place such a high value on respect for people with disabilities. In fact, they disparage it as trying to “normalize” disability (I got a hint for you all–disability *is* a normal part of being human).

Here we are 4 years later. Donald Trump not only hasn’t taken up the anti vaccine banner, hasn’t taken up the “autism is a vaccine induced epidemic!” campaign, he’s now throwing money into the development of new vaccines and actively trying to get the vaccines to market before they can complete safety and efficacy testing.

Instead of “draining the swamp”, he’s pressuring the CDC and the FDA to become part of his political machine, where independent science isn’t reported but rather science-like support for Trump’s messaging are allowed.

The irony is thick. The anti-vaccine movement got the exact opposite of what they hoped for.

So I wonder what they are thinking now. How much do they know that they were played? And do they care that they were played?

I haven’t done much digging on this, but I did run across this from “you are so charming Del, I’ll laugh at your autistics-as-dogs remark” Ginger Taylor:

Yeah, she’s on to Trump. But she still backs him.

It’s rare for the anti-vaccine movement to admit even this much of a mistake (JB Handley, for example is very much in the Trump mold. Including the ‘never apologize, never admit mistakes’.)

I do wonder if somewhere, hidden from view, there have been discussions of “well, we were played by Trump” among the anti-vaccine community.

—
By Matt Carey

Has Generation Rescue disbanded?

3 Aug

It looks like Genertion Rescue has shut it’s doors. If so, make no mistake, this is a very good thing for autistic people and the autism communities.

Their website down. GenerationRescue.org. Follow the link. Or, take this screenshot:

Websites go down. But the GR website has been down for at least a week. And they haven’t posted to Facebook since May 2nd.

We’ve written extensively about Generation Rescue over the years here at Left Brain/Right Brain. GR was founded by JB Handley, now known as one of the main sources of vaccine misinformation.

GR is commonly known for their anti-vaccine stance. Within the autism communities they are known for their focus on denigrating autistic people in order to support the “parent first” narrative of autism as a source of despair. Also, they were known for promoting fake therapies such as chelation. They started out with the message that autism was a “misdiagnosis” for mercury poisoning. They were wrong. Very, very wrong.

But JB believed. He fell for the mercury poisoning lie hook, line and sinker. Generation Rescue’s first website included this quote:

“It is the elimination of this “spark”, i.e. mercury, for which we now have an easy and effective solution. Along with some supportive therapies, autism and certain other neurodegenerative diseases can be fully and permanently reversed. This is NOT a theory but rather, a protocol that has already been clinically validated and the evidence is irrefutable.”

That was 2005. Autism is clearly gone now, right? Mercury was removed from vaccines. The “clinically validated” protocol with “irrefutable” evidence has cured all autistics, right?

Autism as mercury poisoning was a lie. Chelation as a cure was a lie. And that lie was behind how Generation Rescue was born.

It’s surprising they lasted this long.

Good riddance, Generation Rescue. Autistics are better off without you. The autism communities are better off without you. The world is better off without you.

—
By Matt Carey

Children with Autism Deserve Education, but I don’t support C.A.D.E.

17 Jun

There is a charity called “Children with Autism Deserve Education“. C.A.D.E or CADE for short. I ran across them a few years ago and saw some expenses in their tax forms that I felt were, let’s say, interesting. So they stuck in my mind and I decided recently to check into them again.

The name suggests a strong focus on education. I know many who will take issue with the use of “with” autism. That aside, helping autistic kids get access to education is a good thing. The vast majority of the money I donate to charity goes to exactly that cause–providing education opportunity for autistic kids.

The tax records indicate that C.A.D.E. spends a lot of money on non educational projects. On alternative medicine, for example. It looks like they’ve spent money on vaccines-cause-autism research. And if I were donating money just based on the name of the org, I’d not be happy with that.

To be clear, C.A.D.E. is public about their support for non educational projects. That “medical interventions” and research into causes are part of their agenda.

Before we dive into the details of where money is spent, let’s take a look at how they present themselves to the public. If one goes to the C.A.D.E. website and checks the “about” page, the first thing one sees is this:

About C.A.D.E.
Helping Children With Autism Reach Their Full Potential Through Financial Support For Evidence-Based Education And Therapy.

More and more children in the United States are diagnosed with autism. In fact, 1 in every 59 children was identified with autism spectrum disorder in 2014—up from 1 in 150 in the year 2000.

While opportunities for high-quality therapy and educational resources are increasing to account for this growing prevalence, intensive treatments are often well beyond a family’s financial means and many public schools don’t have the resources to provide them.

According to a 2014 study, the total lifetime cost of supporting an individual with autism is an astonishing $1.4 million in the United States. If an intellectual disability is also present, the total rises even more to $2.4 million. Education alone can cost a family an extra $8,600 per year.

We Believe That Children With Autism Deserve To Obtain The Most Effective Means Of Education.
C.A.D.E. Exists To Help Them Access It.

Through grants, C.A.D.E. helps fund evidence-based education, therapy and medical interventions for children with autism that don’t have the financial resources. Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.

From my perspective, this sounded reasonable right up the the phrase “medical interventions”. Education is a worthy goal. Therapy can include speech and language therapy, for example.

“Medical interventions” tells me that they are probably supporting alternative medicine. Many in the autism community promote alt-med and this is a common way that they phrase it when trying to seem more legitimate. But a casual reader might not realize that this phrase opens the door to donations being spent on “treatments” that are generally considered unproven or ineffective.

But keep reading the about page and towards the bottom of the page you find:

Our founders, board and volunteers have personal family experience with autism, and are deeply committed to ensuring that children are able to access the education and medical treatments they need to live healthy lives—as well as supporting organizations exploring the causes of and interventions for this epidemic.

So, yes, they are making it public that the money donated will not all go towards education. But consider further the phrase “supporting organizations exploring the causes of and interventions for this epidemic” sounds like the usual code in the autism parent community for “supporting research which tries to support the idea (failed idea) that vaccines cause autism”.

Two questions come to my mind when I read this. First, are they actually spending money on vaccines/autism research. Second, would they lose donors if this were made more clear in their public statements? Would, say, “Children with Autism Deserve Education and to be subjected to Alternative Medicine” get the same level of donations?

I am particularly suspicious of C.A.D.E. because I know that one of the board members is Jennifer Larson. Ms. Larson is prominent in the “autism is a vaccine epidemic” and the alternative medicine communities. She owns at least two businesses that provide alternative medical services (the Holland Center and Minnesota Hyperbaric). She donated $40k to former congressional representative and committee chairman Darryl Issa. At that time he was hosting hearings on vaccines and autism. She also founded the tiny Minnesota based “Canary Party“.An early version of the Canary Party’s website states:

American children are over vaccinated and over medicated, over fed, undernourished and have record levels of chronic illness and developmental delay.

Emphasis added.

We can get more information from the public tax records. The most recent tax year for which I can get records (tax forms for charities are public record) is 2017. Here’s their tax form for 2017. More specifically, here’s the schedule O for 2017. Schedule O is where charities list “grants and similar amounts paid”. It’s where you can find a lot about where they are spending their money, aside from operating expenses and salaries and the like.

Let’s take a look at the schedule O entries sorted largest grant to smallest:

First we have “family assistance for medical and therapy paid directly to the provider”. Said provider is the Holland Biomedical Clinic. And they note that the Holland Biomedical Clinic is owned by a board member. Which appears to be Jennifer Larson. The Holland Center provides both ABA (which can be considered educational) and alternative medical (biomedical) treatment. This entry specifically says “Holland Biomedical Clinic”. So my guess is that this wasn’t for ABA. To my knowledge, the Holland Center is a for profit business, not another charity.

This was the largest grant given out this year by C.A.D.E.: $15,282.

Next we have a grant for $10,000 to Ken Stoller, M.D. as “Family assistance for medical and therapy paid directly to provider”. Ken Stoller is well known in the alt-med and anti-vaccine communities. It seems odd to me that the amount is an even $10,000. Odd as in, did the the bills for a family actually come out to an even $10k? Even more odd that a doctor in San Francisco is getting a grant I thought were for local families in Minnesota. The famous name alt-med autism doctors do get patients traveling to see them. We don’t know what medical services were purportedly provided for this grant, but it seems unlikely that he could provide something not available in Minnesota. So, the question in my mind was whether this was a specific grant for specific families, or was this some sort of general support for Dr. Stoller?

The next “family assistance for medical and therapy paid directly to the provider” is to the Lovaas Institute for $5,390. This would be on target for the C.A.D.E mission, as the Lovass Institute is a provider of ABA services.

Another “Family assistance for medical and therapy paid directly to provider” is to “Grantee Name: Minnesota Hyperbaric. Grantee relationship: none.” Amount was $4,000. Minnesota Hyperbaric is, I believe, a business owned by Jennifer Larson (board member of C.A.D.E.) and housed within the same Holland Center noted above. Which if true would make the “grantee relationship: none” statement a bit problematic.

There is a $3,000 entry for “family assistance for medical and therapy paid directly to the provider” where the provider is listed as “Laidas”. I can not find who “Laidas” may be. I wonder if this is somehow a misspelling for Lovaas?

Next is Autism Recovery Foundation. Two entries for $2,000 total. The Autism Recovery Foundation is primarily focused on ABA. Yes, there are those who oppose ABA, but this is, in my opinion, spending funds on education. Note that Jennifer Larson is on the board. These appear to be described elsewhere in the tax form as “DIRECT SUPPORT TO ORGANIZATIONS THAT HELP FUND EDUCATION AND AWARENESS OF TREATMENT OPTIONS FOR AUTISM.”

Another “family assistance for medical and therapy paid directly to the provider” grant was paid to James Neubrander, M.D. for $1,410. Dr. Neubrander is an alt-med practitioner in New Jersey.

By the way, take a moment and check out his website. Watch the images that flash by and read the messages. It’s not pleasant at all.

The New Bridge Clinic received a grant for “family assistance for medical and therapy paid directly to the provider” in the amount of $1,190. I believe that is this clinic, which is another provider of alternative medical treatments. This is not educational.

Lastly we have “family assistance” paying rent for a family in need. Paid directly to Chohan Properties. For $1,180. While not educational, I wouldn’t have a problem with this.

A quick summary of the grants which appear to me to be for alternative medicine providers:
Holland Biomedical: $15,282
Dr. Ken Stoller (California): $10,000
Minnesota Hyperbaric: $4,000
Dr. Neubrander (New Jersey): $1,410
New Bridge Clinic: $1,180.

The total for Schedule O is $43,452
The amount paid for alternative medical providers appears to me to be $31,882. Or about 72% of the total grants.

72%

I would be very unhappy were I donor and found that out. It’s not illegal. It is, in my opinion, misleading. I’d think an org named “Children with Education Deserve Education” would be spending my donations on, well, education.

All the above is just for tax year 2017, the most recent where the information is publicly available. What about the other years? I went through the tax forms I could find going back to 2010. Here’s a summary table:

Who are they giving money to? Here are the top 10 projects, by money committed, from what I can see:

1) $56,000: The Autism Treatment Foundation of Minnesota, which appears to be this organization. Jennifer Larson is currently on the board. This org supports ABA for autism, and would be considered on target for “education”. From what I could find this appears to be something like a lobbying organization.

2) $22,000: Generature Rescue. Widely considered an anti vaccine organization. I’m unaware of any education projects they’ve been involved in. They are mostly involved in promoting the failed idea that vaccines cause autism and also promoting alternative medicine for autism. However, it struck me that in 2010 Generation Rescue made a big ($100k) donation to Andrew Wakefield’s “Strategic Autism Initiative” (Mr.Wakefield was the top in Time Magazine’s list of research frauds). In my opinion the SAI was set up to provide support for Mr. Wakefield after his ouster from Thoughtful House. This raises the question in my mind–did C.A.D.E. send money to Generation Rescue as a way of providing funds to Mr. Wakefield? Jennifer Larson is a known supporter of Mr. Wakefield.

3) $19,678: University of Northern Iowa. researchers DeSoto and Hitlan at the University were prominent in the “vaccines cause autism” scene for a few years. The work was poor in my opinion. Prof. DeSoto lists $80k in grants from C.A.D.E. for “Study of Autism among Somali Immigrants in MPLS, MN Area.” Her vitae does not list any publications. There was great interest from the anti-vaccine community in the Minnesota Somali community. Besides apparently accomplishing nothing, this expense by C.A.D.E. appears to have nothing to do with education.

4) $15,282: Holland Biomedical Clinic. This is reportedly owned by Jennifer Larson. The clinic offers alternative medical approaches. An initial visit can run $995, and alternative medicine is rarely covered by insurance.

5) Autism Recovery Foundation. Same address as the Autism Treatment Foundation of Minnesota. ABA based. Would be on target for donations to “educational” orgs, in my option.

6) $12,102. Unnamed medical therapy. Unclear what this was spent on, although it’s a good guess it was alternative medicine.

7) $10,000. Autism Resource Network. Looks like it was a store (autismshop.com). Which had a leaning towards the failed “vaccines-cause-autism” idea.

8) $10,000: Dr. Ken Stoller. Discussed above. Dr. Stoller is well known in the anti-vaccine community. And is in California, not MN.

9) $9,380: The Holland Center. Discussed above. Business reportedly owned by Jennifer Larson. Largely ABA focused, but also houses the Holland Biomedical Clinic and Minnesota Hyperbaric. One of the entries was for iPads. Why they were distributed through Ms. Larson’s business rather than directly is unclear.

10) $7,661: iPad purchase. iPads are often used as alternative communication devices and otherwise educational devices by people with disabilities.

There are a lot of expenses above which, again, I wouldn’t be expecting on donating to a charity calling itself “Children with Autism Deserve Education”.

One last comment. Above you will find this quote from C.A.D.E.: “Since 2014, C.A.D.E. has provided more than $500,000 in financial support to families in Minnesota—helping kids reach their full potential to live healthy, happy, productive lives.” I find that hard to believe. I count about $112k spent on program expenses from 2014-2017. So unless they spent a lot more money in the past 2 years, $500,000 seems like much more money than they’ve spent. Perhaps I’m missing something in the tax documents. I’ll provide them below.

C.A.D.E. fundraises with a run (the Autism5k) and also golf events.

One last topic is interesting here. Here’s a copy of an older form they used to apply for their grants. The CADE Medical & Therapy Grant Application. They specify some interesting requirements:

“These grants are for CADE approved physicians & CADE approved therapy programs.”

“I understand that my child is required to follow the GF/CF diet or SCD diet for the 90-day grant period if the medical grant is awarded and the diet is recommended”.

“I understand that an approved Doctor will be assigned to my child and that I have no choice in this matter and cannot change the assigned doctor. This doctor will be a specially trained for autism. ”

“If you are chosen for the CADE Medical or Therapy grant, you agree to the following:” which includes: “Implement ASD diet such as GF/CF or SCD for the medical grant ” and “Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed.”

First off, keep in mind that Jennifer Larson also helps run an organization called “HealthChoice.org”. Given that, I find the lack of choice in the above quote very ironic. You must follow a diet for 90 days. One must follow the doctor’s recommendation, even if one disagrees. The doctor is ” assigned to my child and that I have no choice in this matter and cannot change the assigned doctor”

Yeah, that’s health choice.

Second, they ask for a lot of information. Including one has to keep a log and take pictures/videos. I would be very worried if I were to see such an application that the org was thinking of some sort of study based on the kids going through the grant program. That would be highly unethical.

Under “Disclaimer” the application states:

If you are chosen for the CADE Medical or Therapy grant, you agree to the following:
• Implement ASD diet such as GF/CF or SCD for the medical grant
• Dropping out of the program once selected will make you liable for the following:
1. All postage costs
2. The fee(s) of 2(two) Medical visits (estimated at $750.00)
• Document the child’s progress through a daily journal and pre and post photographs or a Flip video camera that will be provided if needed. 

All dollars for therapy grants go directly to the provider.

So, where the application previously stated that a diet is required if “recommended”, here the parent is accepting that it they will implement a diet. And, let’s say you think the medical professional isn’t working out for your kid, and/or the diet isn’t helping (or is even bad) for your kid. You get to pay back $750. Remember, parents are selected based on need. So $750 (which by the language reads as though it could be assessed even if you didn’t actually go to one or both of the visits) is possibly enough to force a parent to keep his/her kid in the program.

And, as we saw above, sometimes the grants are paid to clinics run by one of C.A.D.E.’s leadership.

As I titled the article, I believe strongly in doing more to provide better educational opportunities for autistics. But after going through all the above research, I wouldn’t send any of my money to C.A.D.E.. Sadly, this makes me wary of most charities. Especially small charities where it’s unlikely that there is much oversight.

Below are the tax forms for years 2010 to 2017 if you wish to check for yourself. If you find any mistakes in what I reported above, please let me know.

CADE_2017
CADE_2016
CADE_2015
CADE_2014
CADE_2013
CADE_2012
CADE_2011
CADE_2010

—

By Matt Carey

Trump is only the latest charlatan to use the anti-vaccine community

15 May

When Donald Trump was running for president (has he ever stopped running for president and started governing?) the anti-vaccine community threw full support behind him. They were excited because here was a candidate who publicly accepted and promoted the fake and damaging idea that vaccines cause autism.

Before running, Trump supported the idea that vaccines cause autism in twitter. During the campaign he stated his support for this failed idea clearly in a debate. So it’s no wonder that the anti-vaccine community backed him.

Then, a few weeks ago Trump said this, in response to the recent measles outbreak:

“They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots.”

That didn’t sit well with the various anti-vaccine groups. But allow me to take a moment to look at the viewpoint during the campaign. In specific, think about this–while campaigning did Donald Trump appear to be a candidate who would do well by the disability communities? Would someone like my kid benefit from a Trump presidency?

Clearly not. It’s not even a close question. And yet, even autism-parent anti-vaccine activists were pro Trump. Even though life would be harder for their kids after Trump. Even though there would be less support for their kids. Even though Trump would heighten stigma of disability.

One would think that parents of disabled children would run to vote for anyone else. Anyone who even paid lip service to supporting their children.

But the anti-vaccine autism parents didn’t. And I wasn’t surprised.

These are the same parents who:

chelated their kids (even though autism looks nothing like mercury intoxication, could cause harm and in at least one case did cause death)

dumped synthetic chemicals mislabeled as as “supplement” on their kids’ gluten free waffles.

promoted bleach enemas for “treating” autism

injected children with filtered urine

chemical castration of disabled children as a purported “cure”

The list goes on and on. But what do all of the above “therapies” have in common? OK, what do they have in common besides being bogus? They are all promoted by people who say vaccines cause autism.

So I wasn’t the least bit surprised that the anti-vaccine autism-parent community backed Trump. Not for a moment.

Remember back during the campaign when JB Handley (anti-vaccine activist founder of the Age of Autism blog) wrote Trumps Stands with my Son, I Stand with Trump

In it he stated:

But, I will make the point to you anyway: Donald Trump is the best thing that has happened to our kids in a very long time and I hope we can all lay down our issues and stand with him.

Because Handley is a “one issue voter” and that issue is the (failed) idea that vaccines cause autism

Did it matter that Trump had no plan for supporting people with disabilities?

Did it matter that Trump openly mocked people with disabilities?

Did it matter that Trump didn’t have the backbone to actually apologize for such a crude attack, stigmatizing disability?

Did it matter that Trump was pushing to remove the Affordable Care Act, which has allowed many autistics to get medical insurance? As part of that push Trump wanted to remove coverage for people with pre-existing conditions? One would think that pre-existing condition coverage would be a priority for Handley and the anti-vaccine community.

Did it matter that Trump was planning to gut funding for support services for people with disabilities?

Or, to put it simply, did the anti-vaccine community actually put people with disabilities in into their decision to support Trump? No. Not even close.

Trump said vaccines cause autism. And with that Trump got their vote.

Did Trump ever stand with any autistic? Anyone’s child? Anyone’s son? Nope. Trump stood with the anti-vaccine activists themselves.

And now Trump has abandoned them. It may only be for now. But the anti-vaccine community isn’t large enough and the sentiment against them is rising.

Here’s a response to Trump from Kim Rossi at the Age of Autism blog:

From an MSNBC report yesterday: President Donald Trump commented on the recent measles outbreaks, saying that people “have to get their shots” and called vaccinations “important.”

Will the First Lady share her children’s vaccination status, please? We would have like to have seen the Obama girls’ records too. No partisanship here at AofA. Both sides of a rotten apple with a pharma profit core.

Trump is now part of the “rotten apple with a Pharma profit core”.

No partisanship, eh Kim? I guess you finally realized that being a charity (the Age of Autism converted to a charity a few years ago–before the election) actually means having to follow the laws imposed on charities. Like abandoning the clear partisanship you showed in promoting Trump’s candidacy.

So Kim…JB…and the rest of you: Trump fooled you. Did you stop for a moment and think, “wow, I can be fooled. I wonder who else has fooled me in the past and who is still fooling me now?”

I doubt it. And that’s too bad. You all could do a lot to undo the harm you’ve caused.

—
By Matt Carey

Today’s measles outbreak, brought to you by Generation Rescue and other anti-vaccine misinformation sources

1 May

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

–J.B. Handley. Founder of Generation Rescue and the Age of Autism Blog.
March 17, 2010

Kelli Ann Davis. Anyone remember that name? She was a spokesperson and political liaison (or something like that) for Generation Rescue back in the day. As in 10 years ago or so.

I’d be amazed if anyone actually remembered her name. It took me a while to remember her name, but I remembered her. She was a frequent commenter in online discussions on vaccines. News stories and blogs. She really liked to point out that there were pockets of under vaccinated people. Schools and communities with low vaccine uptakes. And there weren’t outbreaks of diseases. This, in her mind, seemed to be evidence that herd immunity was a fake idea. Worthy of scare quotes (“herd immunity”).

Here’s an example I dug up from the Age of Autism blog, circa 2009:

She stuck in my mind. She was so arrogant in her ignorance. So full of her self with her bad logic. And she was spreading misinformation.

I knew it was only a matter of time before the outbreaks did come. Before someone imported something like measles into one or more of these under-protected communities.

I won’t hold my breath waiting for her to come back and take responsibility. I won’t wait for Generation Rescue to accept its role in causing suffering. I won’t expect other purveyors of misinformation to show the backbone needed to admit a mistake.

I will admit I was wrong in one area–I worried that eventually the press would start to realize that a great deal of the misinformation campaign has been waged by a vocal minority of autism parents. That is why I remembered Kelli Ann. Not for the chance to one day say, “I told you so”. I knew that these outbreaks would come. The outbreaks would cause people to suffer, some to possibly endure lasting harm and, let’s hope this doesn’t happen, death. While slowing or blunting the harm from these inevitable outbreaks was a worthy goal in and of itself, I was worried that the autism community would take the blame for people like Kelli Ann. JB Handley. Jenny McCarthy.

I am grateful that this hasn’t happened. So far. But I also think it’s on us, autism parents, to call out the behavior of our own. We need to reduce the misinformation that comes from our community. Be it vaccine misinformation, disrespect of people with disabilities or spreading medical pseudoscience.

—
By Matt Carey

p.s. Yes, I realize that “anti-vaccination” and “misinformation source” are largely redundant.

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